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Hi I'm Jean - ask me questions about Occupational Therapy

Jean_OTJean_OT Member Posts: 532 Pioneering
edited August 2019 in Disabled parents
Jean Merrilees is an Independent Occupational Therapist, registered with the HCPC. She previously worked for Scope’s Information Service for 25 years, so has a wealth of experience in answering disability related queries. She welcomes questions about how to overcome barriers that hinder disabled people being able to do the things they need or want to do.
Occupational Therapists find solutions by suggesting adaptations to the environment, suggesting aids or equipment to assist, or adapting the task to make it more appropriate to the needs of the person.
Jean is only able to check for posts once a week so apologises in advance if there is a delay in responding.

Jean Merrilees BSc MRCOT

You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

Replies

  • paula_artistpaula_artist Member Posts: 10 Connected
    Hi Jean. Unusual one for you. I have a movement disorder. No warnings. Large tics. When shopping sometimes my arms jerking forward then back again with a lot of power. Jerking the trolley forwards and backwards. Really fast. 
    This means I can't push my grandchildren in the pram. 
    Two years ago it affected me mentally. As my third grandson was born. My next is due in April. Save putting sponge all around the baby im unable to do grannie things. I can't pick a baby up, carry. Standing still. Walking. I have to sit on sofa leg at back one on floor. Have baby handed to me then wait for me to get comfortable, Move my right arm away. As I punch my leg. So, can you think of way to be able to push a pram please.
  • Jean_OTJean_OT Member Posts: 532 Pioneering

    Hi @paula_artist

    It's good to have this chance to talk to you again! 

    It was me who responded to your previous message elsewhere on the community, where I suggested seeing if the charity REMAP could design and make you a personalised adaption to help you be push the pram

    http://www.remap.org.uk/

     I also suggested  that it might be worth going onto the website community of 'Disability, Pregnancy & Parenthood' 

    https://www.disabledparent.org.uk/

    to see if any of their  community members had found a solution to this difficulty.


    Now that you have arrived here at my 'Ask an OT' section of the Scope Community I have had opportunity to research your query further. So I looked at ways for you to be able to push a pram without using your arms, thus avoiding the difficulty of the spasms in your arms jerking the pram about. I have found this product, which would enable you to push the pram with your body 

    http://www.healthchecksystems.com/stroll_smart_jogging_stroller_adaptor.htm

    Hopefully it might be a potential solution for you, but if you don't think it would be the correct solution for you, perhaps you could at least show the product website to the inventers at REMAP to get them thinking what improvements to the idea they could make.

    I'd be interested to hear how you get on,

    Best Wishes

    Jean  

    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

  • paula_artistpaula_artist Member Posts: 10 Connected
    Thank you. It wasn't until I'd sent and reread did I realise it was you. I'll have a look. Paula_artist
  • wheelybabewheelybabe Member Posts: 13 Listener
     Hi Jean, my name is Nicola John, I am 27 years old and suffer from a Condition called Friedreich's Ataxia. This is a progressive condition, there for I have care to help maintain my daily activities. At present I live with my parents and they provide my care in the evening and throughout the night. As you can appreciate both my parents are getting older and finding it hard to maintain the level of care I need. As a young woman I find it very hard to be independent and socialise in the way I would like when my parents are in the next room. 

    In the past I have had to rely on my carers to have vehicles to take me out as I live in a very rural area with no regular bus routes. Only recently have I had a wheel car accessibly vehicle, which does mean I can go out if needs be. This is a problem in the evenings if I want to go out and socialise as I mainly have to rely on my parents to take me which is not always convenient.

    On a personal basis I am feeling very low and depressed about the whole situation as I don’t feel I am getting anywhere. If I had my own home I know I would be able to live my life as I want to and not have to blend in with other peoples lives. I feel that my friends are all moving on in life and I am stuck in a rut I can not get out of. I appreciate I will still have to have care and assistance in my life but at least it will be on my own terms.

    The hope you can open up discussions regarding the fact young adults like myself do not have many options when it comes to supportive living accommodation. There seems to be plenty of places to live if you are over 55, have learning difficulties or mental health issues but none for physical disabled people in Carmarthenshire, Wales.

    Help me?

  • Jean_OTJean_OT Member Posts: 532 Pioneering

    Hi Nicola

    Thanks for getting in touch.

    Have you been able to speak to your parents about your desire to live more independently? If so are they supportive of what you want to achieve?

    Normally the starting point for making the transition towards independent living is having an assessment of your care need done by the local authority which covers the area in which you live.

    In the current economic climate most local authorities are very careful about how they spend their social care budget. Obviously it is cheaper for the local authority having you live at home with your parents providing care, then it would be if you had your own place with professional care. Therefore, I suspect that it is unlikely that the local authority will be very motivated to seek out opportunities for you to live more independently if they think that you and your parents are happy to continue with the current arrangement.

    However, your parents are under no obligation to continue providing you with care or housing so if they were to inform the local authority of that decision the urgency for the local authority to put alternatives in place would increase.

    Scope is committed to campaigning for disabled people to have improved opportunities for self determination, see our vision statement: https://www.scope.org.uk/About-Us/Vision

    You may also wish to make contact with Disability Wales, they lobby for the rights of disabled people in Wales: http://www.disabilitywales.org/about/

    I'm concerned about your emotional well-being. It must be difficult feeling that others are moving on whilst you are encountering barriers to achieving the things you aspire to do. Please do try to find opportunities to talk about these feelings. I'm sure that other members of this on-line community will be able to relate to how you feel. Do you think there would be any value in talking to your GP about how you are feeling emotionally? Your GP may be able to arrange some support for you and, at the very least, having how you are feeling documented in your medical records may help provide evidence for why addressing your housing needs should be a priority for the local authority.  

    Also are you aware of Ataxia UK ? They are a source of specialist help and advice for people with Ataxia https://www.ataxia.org.uk/

    Do keep in touch and let us know how you are getting on

    Best Wishes

    Jean

    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

  • AndrewAddisAndrewAddis Member Posts: 9 Listener
    hi Jean did you read my post thanks
  • Jean_OTJean_OT Member Posts: 532 Pioneering
    hi Jean did you read my post thanks
    Hi @AndrewAddis
    I haven't read anything from you subsequent to having spoken to you yesterday. If there is anything additional that you need advice on please email [email protected]
    Thanks
    Jean 

    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

  • mom123mom123 Member Posts: 8 Listener
    Hi Jean I need help with my PIP claim, I was taken off higher rate off mobility to standard rate.
    I have an ileostomy, spondolitus, arthritis and had a lower infusion of the spine. They have told me that because I can pick a cup up and plan a route im not entitled to the higher rate. ImI 61 and finding it hard to get about and always in costant pain. I'm on 20+ tablets a day, take humira injections and constantly need the toilet about 7+ times aday. Could you please advise me on any help.
    Thank you Kevin.
  • Jean_OTJean_OT Member Posts: 532 Pioneering
    Hi @mom123 / Kevin 

    Thanks for your post. However, I'm not really the most appropriate person to respond to it. My "Ask an Occupational Therapist" section of the community is really to try to address matters that relate to Occupational Therapy and it sounds as if you need to be taking advice from a Benefits Advisor. You could post again in the appropriate section of the the community:
    https://community.scope.org.uk/categories/ask-a-benefits-advisor you could also contact the Scope Helpline on 0808 800 3333 or email [email protected]

    However, I can offer you a basic response.

    The difference between the standard rate of PIP Mobility Component and the enhanced rate is whether you score 8pts for the standard rate or 12pts (or more) for the enhanced rate, against the descriptors. There are only two descriptors for the mobility component, shown below

    Mobility Activities Descriptors (Points) 

    1. Planning and following journeys 
    a. Can plan and follow the route of a journey unaided. (0 )
    b. Needs prompting to be able to undertake any journey to avoid overwhelming psychological distress to the claimant. (4)
    c. Cannot plan the route of a journey. (8) 
    d. Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid. (10)
    e. Cannot undertake any journey because it would cause overwhelming psychological distress to the claimant. (10)
    f. Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid. (12)

    2. Moving around 
    a. Can stand and then move more than 200 metres, either aided or unaided. (0)
    b. Can stand and then move more than 50 metres but no more than 200 metres, either aided or unaided (4)
    c. Can stand and then move unaided more than 20 metres but no more than 50 metres. (8)  
    d. Can stand and then move using an aid or appliance more than 20 metres but no more than 50 metres. (10)
    e. Can stand and then move more than 1 metre but no more than 20 metres, either aided or unaided. (12)
    f. Cannot, either aided or unaided, –  
    (i) stand; or  
    (ii) move more than 1 metre.  (12)

    Chose one sentence (a-f) from descriptor 1, and one sentence from descriptor 2, that best describe your abilities. If the total points awarded for these two sentences is 12 points or greater you may have an entitlement to the enhanced rate of the Mobility Component. As you can see there is nothing in these descriptors that relates to your ability to lift a cup  (that would be relevant to the 'Daily Living Activities' Component, 'Taking nutrition' descriptor.)

    The other factors that you mentioned (medication, pain levels etc) are only relevant to the Mobility Component if you can evidence how they impact on your ability to carry out the activities listed above repeatedly, in a safe matter, in a reasonable time-frame and to an acceptable standard at least 50% of the time.

    Looking at the descriptors If you think that they have failed to award you points that you should have got you can initially ask for a Mandatory Reconsideration, and if that doesn't come back with what you think is the correct result you can go to Tribunal.

    A word of caution, when you ask them to look again at your claim they look at the whole thing. Therefore, if you have an award for the Daily Living Activities they will also be looking at that again. Although it is unusual there are people who come out of a Tribunal having been awarded less than they had when they went in. Therefore, it is wise to be very clear about the descriptors, exactly where you think you should be awarded points and how that can be evidenced. If you are unsure please seek professional advice from a Benefits Advisor.

    Best Wishes
    Jean   

      
     
     

    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

This discussion has been closed.